Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.

My daughter is now 14 Ãƒâ€šÃ‚Â½ and this last birthday was the FIRST birthday I wasn't misty-eyed all evening (her 13th birthday was also her bat mitzvah, and I had HAPPY reasons to be misty-eyed).

You do need to get help for your daughter's sake as well as yourself. I work with kids, and kids with overly-anxious and/or depressed parents often are themselves struggling later on. When you take care of yourself, you are able to let her grow, and develop, at least a bit free of your fear. That hyper-vigilance you speak of is very, very common with PTSD, and the good news is that you CAN get help, and it DOES get better...with hard work, yes, and often medication. What happens is that the memories actually wear a groove in your thinking and brainwaves, and your brain chemistry adjusts to being in that constant state of "alert." Sometimes it does take medication to stop that short circuit in your brain so that you're able to react to the real circumstances in front of you, rather than the memories that you experience as though for the first time.

I work in NICUs as part of my career, and work with parents who have had horrendously traumatic experiences like yours (and mine). Those first couple of years are hard enough. But the time and work do help to make it better, and allow you to truly enjoy your daughter...and perhaps think of a sibling down the road when YOU are ready.

I know how you feel my dr's told me to get an abortion before I got preeclampsia due to some other issues they thought my son would have but I said no and then I got pre e and had him besides all the tubes and surgery for nec he was in the hospital for 3 and half months he is now 11 months but 8 months corrected and doing wonderfully hes had to have some surgeries but nothing that was life threating. Sometimes i look at him sleeping and I cry when I think about the fact that I even thought about abortions and even though I am glad I didnt it still makes me wonder what if I did. And gong back and for to the nicu was insane but it almost felt like home and I look back now and think about how short the journey was to getting my son home with us 3 months is such a short time compared to 18 years of him growing up. I understnad you are scared but I would sleep on the floor beside his crib every night but if you are feeling over whelmed with sadness I think medicine is the best solution because you want to be healthy and alert for your baby. Good luck

I guess i posted on the wrong page..i too, was glad to see some of the posts here.. thanks to the insight of others who have been there and done that..so to speak.

I just spend a 2 1/2 month ordeal with my baby born surprisingly NOT because my preeclampsia spiraled out of control as i had thought would be the case. 48 hours after my 3rd weekly NST (32 weeks)-the nurse ordered an ultrasound due to the mult episodes of his heart. There was discovered 2 more issues to add to the mild preeclampsia i had going on..too much amnio fluid adn his heart chambers were abnormal and enlarged. I was sent home to FOLLOW UP 4+ days later. unfortunately we never made it because I went back 48 hrs later -as i didnt feel him moving. come to find out he was in great danger. he put about 3 pounds of fluid on from the time i left - until the time i came back. we were sent via helicopter to deliver. he had HYDROPS, and they NEVER found a reason for this happening to him.

they gave us basically a "we are not expecting him to make the delivery - if he does he only has a 10 % chance of survival". Amazingly although he spent 3 weeks on a vent, 2 chest tubes, navel lines, multiple ivs for meds etc. he was in a medically induced coma for so long, it took 3 weeks for me to hear his first cry- in which it was so faint and so hoarse. then a month to actually get to hold him, and of course little by little he pulled through.

we are home on an apnea monitor and heart monitor, and i find all the same things happening to me. i thought when i got home it would subside but i feel it has made me worse.

i was in such a fog healing from my c section in which i never gave myself any rest to do so. i had my son on the next floor with an appendix surgery due to it rupturing just 6 days after my traumatic delivery. i am extra jumpy and alert inspite my total lack of sleep and complete exhaustion. i am so exhausted but can not sleep as i am so afraid of all the thing si feared in our 2 1/2 month stay in the NICU. i fear he will die, or the machine will beep and i wont be able to revive him. i hear the helicopter in my head even though i am not there anymore. i am so afraid i will drop him or hurt him because i feel he is so fragile. (and he is my 4th and last baby!)i know i went through alot and i suppose i need time, but while it seems everyone has "moved forward" and are so happy and thrilled he is doing well, (of course i am so thankful and thrilled he survived adn home)..i am stuck in the last few months in which i was so sure once i saw the light at the end of the tunnel with his long road of recovering from being on deaths door- that i too, could really move forward.

i cry alot when i hold him- happy tears -of course but thinking that if i had not gone in the day i did he would not be here. they were pretty certain he was not going to make it the day we delivered. i cry thinking of all the suffering he went through and i just wish that i could erase certain things from my mind. especially the nightmares i have of being on a cold steel table in the OR to have a room full of doctors -who are not doctors- trying to kill me and my baby. somehow in my dream , even though i am medicated and of course paralized from the chest down for the c section- i manage to throw myself on the floor. but of course i can not get away, so they put me back on the table and i act so kind and courteous and thank them for "helping " me back up because i dont want them to know that "i know" they are going to kill me and the baby. SO STRANGE, and i have this one all the time. i think because i have 1 photo of him out of my belly , cord had not yet been cut and blood of course is in the pic and i just see him there with 3 sets of arms tending to him.

sorry to get so in depth, and sorry for TMI but i am just not sure what everyone in this situation like myself have done besides talking (i too, dont want to take any meds) but i cant even think of returning to work any time soon. i hate to get in the shower for 15 min and leave him afraid something will happen. the beeps on the machine make me jump, the thoughts of our life in the nicu are still so fresh and so vivid that i can not even think about how i could emotionally handle working and focusing etc. and then of course the physical exhaustion ifeel. i am so tired and can not sleep . i take "cat naps " from 30,60, maybe a 90 min nap from 3am to 8am. the rest of the day i am up. i almost rad a few red lights driving and am now not driving- i get so off into my NICU world i can not focus. i seriously thought i am not safe to drive. i am so afraid of even the future for him as we were told everything is normal , all his organs and brain and such, but while that is so reassuring i wonder if everything down the road will be ok. i fear so many things and i am just saddened by how much this poor little baby had to endure.

i also have a 2 year old who adores her new baby brother and i spend lots of time occupied with her and not all my thoughts. but , i am not sure what to do and of course going to talk to someone i feel worried they may feel i am a crazy person and certainly could not be good enough to handle that type of emotional stress and be a "tentative" mommy. funny because i feel so hyper and perky due to the monitor and the fact that i feel worried about him all the time. so i am sort of scared to go and "talk" to someone about all the crazy dreams and fears. i am not depressed and withdrawn, thankfully, i am just so worried and replay the last 2 1/2 months over and over as if it were in the now. i try not to look at the pictures but do, and i wonder if he was in pain in my belly before his delivery etc. it makes me so sad.

then i also want to know how this happened and understand some of the things i read in my records. such as my placenta was (at 32 wks)690 grams when a normal one at full term is only 1 pound wich i beleive is 470 grams . the baby was 32 weeks but measured at 36 due to the fluid. there was no end diastolic flow, they did write "prob pe/ascites" (i think i started to fill up myself from him and of course fluid) i read a large placenta can link to hydrops and preeclampsia and wonder besides the "mirror syndrome " i read, since there was "nothing wrong " with the baby (no congenital problems no heart problems, etc etc and not imune hydrops which is due to rH blood type) so i am also trying to understand what happened to me.!!
my baby of course had a 2/8 on BPP just before delivery and i read teh 2 was given for my amnio fluid, he was pretty much just floating around in there. not breathing and not moving. they intubated him and of course chest compressions in the OR and i am in awe how strong he obviously is. I jsut feel maybe know ing what exactly happened to ME would also help??

i am sorry to ramble on, but dont know what seems to be a good solution and i know we are all different, jsut ike with the awful pre e..same disease but different women..if this truly is PTSD and reading other posts i think perhaps i may fall into that category, i am so confused on what to do. do i let it run its course for how ever long it takes. or try and get some help with perhaps talking to a counselor?

then naturally i worry about work. i am on my maternity leave in which i spend 10 out of my 12 weeks there in the NICU and certainly am in no shape physically or emotionally to return. i originally thought i would extend it anyway, as i was worried i would deliver due to pre e- and of course this ended up being far worse case scenario so ...here i am just wondering what to do .

anyone know if there are some places to contact for parents of nicu/traumatic delivery? just searching for ideas and of course help . this is so much more than i could have ever imagined.

thanks for listening and sorry if you made it to here and are ready to go to sleep (sorry to ramble)i will keep all in thoughts, sure is a relief to know i am not crazy and this actually makes me feel if i didnt go through this, then i really should worry. how could anyone not be effected but such tradgedy.

quote:Originally posted by vivsmommy

Hello all, I am a newbie. I am so happy I found this site. I have NEVER spoken to anyone about the terrible sadness I experience over my experience with Preelampsia and having to see my daughter in the N.I.C.U. My daughter is 16 months and perfectly fine, but I still can't get over that pain of seeing my baby so helpless. I guess I will tell you my story.

I went to the doctors at 27 weeks because my feet were horribly swollen and so were my hands. I had to get my wedding ring cut off. I went to my mothers house and she told me to go right back to the doctors. Thank goodness I did because my blood pressure was at 200/94, I was seeing spots, and I had the worse headache. Long story short they admitted me, did some tests, and diagnosed me with preeclampsia.

Everyday in the hospital I was giving blood and vitals taken every hour. The worse, I'm pretty sure you ladies can relate, was the heart monitor. Oh my goodness...this was the source of all of my sadness. When I would move in my sleep I would wake up in fear because I couldn't hear it. By day three they had to do an emergency C-section because blood was not getting to my baby. The C-section was a breeze. The anti siezer meds were a monster.

What I was not prepared for was not having my baby with me. It was the most agonizing feeling I've ever felt. Seeing her with all those machines and tubes literally made me want to just die. Everytime I had to go home I felt like I was being gutted. I could NOT stop crying to the point I would lose my breath. I did not sleep for a week, and could not eat. The N.I.C.U was open 23 hours and I was there off and on about 18 of those.

After a 2 week stay my daughter was able to come home. However, I remained scared...I mean so filled with fear for my baby that I would stand over her crib, pray constantly, and wake up in a cold sweat and run to my babies side to make sure she was fine. My husband, family, and friends could not help me...I felt so scared!

My doctor said I had post traumatic stress syndrome coupled with postpartum depression. He prescribed me medication, but I refused to take it cause I wanted to be 100% alert for my daughter. I was so obsessed with her being okay that it took over my life. For the first 4 months I had reoccurring nightmares that my daughter was still in the N.I.C.U and had fallen behind her "bubble" she was in. The worse was I was told to bring her a balloon by one of the nurses, I woke up before I could give it to her. I cried the whole day over that dream. Sometimes I would still hear her heart monitors as i woke up.

Fast forward 16 months later and I still cry. A song will play on the radio and I will lose it (not infront of anyone, I just go somewhere alone to cry). I still have minor heart issues from the preeclampsia. I still wake up in fear and check my daughter to make sure she is breathing. Everytime I think about my pregnancy all I want to do is cry. My husband wants us to have another child, but I refuse.

Why does this still hurt? Why can't I look at my daughter and feel proud instead of sad? Why am I completely obsessed with her safety to the point I am scared to let any one other than my husband and mother watch her? When will the crying stop? Anyone else traumatized by there experience with preeclampsia? Does it ever get better.

Sorry about the rant everyone, this is just the first time I've ever spoken so openly about this pain. She is my whole life and I love her so so so much, but I just want to forget about her traumatic birth and focus on the pure joy she brings us and our future!

I just have to echo what others have said and it's something you may never get over you just figure out how to live with it.

I'll admit I feel guilty at times. I had severe PE/HELLP at 25 weeks in 1995. My son only survived 2 weeks. With Michael I was on bedrest and he had IUGR, we made it to 32 weeks but he was still 2.10 at birth. In NICu for 6 weeks, had NEC and thankfully not much else.

I do feel guilty that he had to deal with some issues due to my inability to have a healthy pregnancy. He's behind on speech now has to have hearing aids for both ears, wore a helmet for 4 mos for plagiocephaly (flat head)....but I have to also remember he is the happiest, loving, easy going child I"ve ever met...and makes me smile daily. I couldn't love another human being as much as I love him.

I am very sorry to hear about your issues that are all very understandable. I had PTSD after maltreatment after a miscarriage that almost left me infertile (first pregnancy) and had counselling for a year. I refused to take any medications, since I thought that "I had a good reason to feel the way I did". Two years later I have recently gone on medication for other reasons and cannot believe the difference it makes for me. I had not realized the full degree of my anxieties.
I am very much against medications in general, but in hindsight, I would have wished to accept that (huge) little bit if extra help sooner. Have you considered to have some conselling and talk to a doctor about possible medication? All the best.

I can definitely relate to how you are feeling! My son was born at 26 weeks and will be 4 in a few weeks. This is the first birthday that I have not been reliving the whole trauma for the weeks leading up to it. I am actually looking forward to his birthday:).

I ended up taking antidepressants because I just could not accept my son's various special needs arising from his premature birth. My son has lasting disabilities that he will have for his whole life. I would never have made it without the antidepressants. You mentioned that you want to be fully "alert" for your daughter. In my experience, without the antidepressants, I could not be fully alert for Jacob and my DH. After about a month, I really felt like myself again and breathed a huge sigh of relief!

Fast forward 2.5 years later, I am gradually weaning off my medication and embracing life in a much more spiritual and appreciative way. I no longer look at how much I "lost", but how much I have to be thankful for. This allows me to truly enjoy my son in a way that I would not have, but for his premature birth:)

I can also relate. I was diagnosed & hospitalized with PE at 28 weeks & was induced at 33 weeks. My daughter spent 16 days in the NICU. She survived & is a thriving and normal 6 1/2 year old now. It took us this long to finally decide to TTC again because I wasn't sure I would be able to handle it emotionally.

After my daughter was born, I was a mess. I cried the whole way home from the hospital because I didn't have her with me. After a few days of not sleeping & trying to stay as long as I could in the NICU, I forced myself to stay home for a day to allow my body to rest. My husband had to drag me back to the hospital the next day... I actually didn't want to go! I was getting so much crap from the nurses about pumping (my milk never came in), I was feeling guilty for not being the first to hold her (due to the stupid Mag), not giving her first bath, changing her first diaper, not being there for all of her feedings. I felt like I was a failure and she was better off without me. I actually remember a time when I was driving myself to the hospital to see her & wondering what would happen if I drove myself off the overpass.

At my 6 week PP check-up, I cried the whole time. I'm pretty sure I scared the crap out of my OB. He referred me to a therapist... I didn't go. I stayed a basketcase until my daughter was 2. We were having her birthday party at our house and I had a complete nervous breakdown. I don't remember much of the party, but I do remember my husband asking what the * was wrong with me. He threatened to leave me if I didn't figure out a way to find myself again. He was right... I was completely lost.

I finally saw a therapist who diagnosed me with PTSD and Postpartum Depression. I was put on 4 different antidepressants before we found one that worked. I was also put on Xanax for anxiety. I saw her weekly & then bi-weekly for well over a year.

When Grace was 4, we decided to TTC and that's when we saw the MFM for the first time and got all of the underlying disorder testing done. Not to much after that, I started falling back into the depression and anxiety again. I went back to the therapist (and back on the meds) for a while. It wasn't really until we had a "plan" on how we would handle another pregnancy that I was confident going forward (not only with TTC, but with my LIFE) without loosing my mind. There was something theraputic about having those test results in my hand... for knowing there was a reason behind everything that happened. Honestly, the pain of my Lovenox shots every evening is more cathartic than any antidepressant ever was.

PE and everything that results from having it flat out sucks. I still feel absolutely horrible for falling apart the way I did because there are so many people out there who have lost their babies and wives/daughters due to this horrible illness... like I don't have the right to feel the way I did/do, given the fact that ultimately my pregnancy was successful. I still find myself feeling very selfish (both for being such a basketcase, and for tempting fate again). It really is a rollercoaster that I'm not sure any of us will ever fully "get over".

Thank you for sharing your story. I think a lot of us still feel very alone in our feelings and it's so helpful, even after all of these years (and therapy) to know that we're not alone in our mess of emotions.

lauchlan, reading your story was so close to how i felt. the pain and yes when my son was still in the nicu i felt he and my husband would be better off without me. also the still feeling alone. i still often feel that way. my sons first birhtday is in two weeks and im not looking forward to it. my mind just keeps replaying what was happening a year ago. so no there is never any forgeting or even getting over what happend to alll of us, but maybe someday there is aceptance.

It's ironic I found this posting. I was going to post something similar but wasn't sure what to say. I don't even know if it is guilt or PTSD for me, but sometimes I think of of everything especially the day her heart and breathing stopped with us right there. I thin k how lucky I am to have a perfect child and get angry almost that no one else seems to understand. I feel as though I want someone to acknowledge what a miracle it is.

Sorry to rant. But it is normal feelings. Hugs and wishing you the best. Also I agree that meds can be a wonderful help as can therapy.